Lila Update 3/31/15

I’m still in shock. We went from meltdowns and grabbing onto us for dear life mere weeks ago to yesterday – she took her “Go Outside” PECS card off the back door and brought it to us so she could go outside. The simple act of being outside with our daughter is probably a simple, mundane act for most families, but it’s been amazing for us. I’m so grateful, and so happy for Lila that she enjoys being outside, enjoys swinging, enjoys walking around and picking up sticks – it’s all just absolutely incredible.

If you had told me a year ago that she would be willingly playing outside while wearing shoes and her glasses – I honestly would have thought you were completely insane.

As always, a HUGE “thank you” to Janet – who helped guide us through the entire process per usual. We have three and a half more months with Janet before Lila ages out of SoonerStart. We’re all so lucky to have her with us!

It’s become very clear to me that between Lila aging out of SoonerStart this summer and starting at the developmentally delayed pre-K program in the Fall, it’s inevitably going to be a year of constant change. I don’t do change well. It’s taking everything I have to try and keep up, and to try and let go at the same time.

This week we’re working on patience and transitions – using patterns with both countdowns and a “first-then” approach. The countdown now has a visual support that we’re using as well – I really think it helps, especially in times of high anxiety as in switching from one preferred activity to another. For example: “First we play with “snow”, then we play with bubbles – five more!” and so on and so forth. She’s doing very well so far – as she has with most everything lately.

We have also expanded her PECS cards considerably – a couple of issues here: trying to transition her from the pictures we take ourselves to more cartoon-type pictures made with Board Maker – that will be more in line with what her pre-K will be using.

I’ve also noticed she’s been having trouble initiating at times – actually going over to the white board, specifically to get food/drink cards. To help with that, I have been taking a few preferred item cards off the magnetic whiteboard and instead placing them on the coffee table – this makes it a tad easier for her to initiate, and once she’s done that once I can place it back on the whiteboard and she typically doesn’t have any more problems asking for more after that.

You all probably saw the video on our Facebook page of Lila saying “A clue!” from Blue’s Clues. That thrilled me like nothing else in a very long time. Eye contact, interaction, verbal imitation – all of that while having fun as well. Having fun while we’re working on something has always been key for Lila.

Within the past couple of days – what has happened with prior words like saying her name, saying “Dora”, etc. – has happened again. Now that she’s consciously trying to say it, it won’t come out right. We think that perhaps an apraxia diagnosis is in her future, and would explain this particular phenomenon.

I will end on a happy note: the other night she started making an odd new noise “nyah, nyah, nyah”. I started mimicking her. There is nothing like those moments: she turned quickly to look at me in the eyes, smiled SO big – and giggled. Then she made the noise again and waited for me to do the same. Back and forth for maybe 15 minutes – it was awesome.

I will update again soon, you never know what Lila’s going to do next…. GO, Lila, GO!